The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

[Tom: This has more details for the UK study for which (US) NIHfunding of US$1.6m was recently announced. It got its seed money fromAction for ME, the (UK) ME Association, ME Research UK and a privatedonor. I have given each sentence its own paragraph to make it a biteasier to read.]

A longitudinal study will be conducted of clinical presentation,immune phenotype, gene expression and virus infection among ME/CFSpatients and MS and population controls frequency-matched bygeographical area of residence, age-group (within 5 years), and sex.

Clinical samples will be collected for studies of NK cell functi onvirology (herpesvirus infection), and gene expression and for bankingas a resource for future ME/CFS research.

Hypothesis:

ME/CFS is associated with immune dysfunction, which results from - orpredisposes to - herpesvirus infections.

Immune dysfunction will present as alterations in NK cell functionthat may lead to, or result from, alterations in cytokine productionand altered expression of diverse immune-associated genes.

Finally, we predict that the ME/CFS immune phenotype may fluctuateover time and in association with clinical presentation and that themajority of patients clinically characterized as having ME/CFS willshow a biosignature distinct from that of controls, and that furtheralterations will be seen during episodes of clinical exacerbation.

Activities and objectives:

i) Collect clinical and other data and venous blood samples atbaseline and 6 months or at another time during the 6- month follow-upperiod when there is a perceived "significant" deterioration insymptoms;

For immunology and virology, 100 cases, 50 MS controls, and 50 healthycontrols will be sampled at 2 time points.

For gene expression, we will analyze 50 ME/CFS cases, 25 MS and 25healthy controls, each at recruitment and one follow-up.

Cases will be selected from UK ME/CFS Disease Register and NHS ME/CFSspecialty and primary care services in London and Norfolk, Suffolk,and Great Yarmouth and Waveney, UK; MS controls via the NHS; andhealthy controls will be identified by ME/CFS patients (excludingblood relatives) or GPs.

Outcomes:

Identification of putative biomarkers for diagnosis, severity, andprognosis of ME/CFS, which can be evaluated in larger (ideallyprospective) future studies.

In the long term, identification of robust biomarkers will allowclinicians to correlate ME/CFS phenotype (including c linicalpresentation, genetic, immune, and viral markers) with diseaseseverity and prognosis and may reveal new options for interventionsresearch.

There is a clear need for research in these areas, and the inclusionof severe cases using home visits will allow for research on a subsetof patients often neglected in ME/CFS studies.

Because approximately 1-4 million Americans have ME/CFS, this studyhas the potential to impact the lives of a large patient population inthe US as well as advance the state of the field in the US, UK, andglobally through the potential identification of evidence related todisease etiology and pathophysiology as well as disease subtypes andbiomarkers, revealing potential routes for treatment.

Public Health Relevance Statement:

This is, to our knowledge, the first longitudinal study of ME/CFS toincorporate both mild and severe cases, age, sex, andresidence-matched Multiple Sclerosis (MS) and healthy controls, and toincorporate virological, immunological and gene expression data intothe same study. There is a clear need for research in these areas, andthe inclusion of severe cases using home visits will allow forresearch on a subset of patients often neglected in ME/CFS studies.Because approximately 1-4 million Americans have ME/CFS, this studyhas the potential to impact the lives of a large patient population inthe US as well as advance the state of the field in the US, UK, andglobally through the potential identification of evidence related todisease etiology and pathophysiology as wel l as disease subtypes andbiomarkers, revealing potential routes for treatment.